Hello!
I also posted this to theNF L_J support site but wanted to introduce myself here. :) Hi, I'm Meg. I'm 30 years old and live in Virginia Beach, VA. I was diagnosed with NF as an infant so for me, it has always just been a fact of life. I have had several surgeries to remove tumors. Only one in-patient, though, and that was when I was 8, to have a large tumor removed from my spine and one from my foot. Since then, I have had the one on my foot removed again when it came back, and then several small bumps removed from my face, neck, arms, hands, and finger. I also have hundreds of small tumors on every level of my spine, but they are not posing danger right now. So we are going to monitor them and as long as they're not growig we're just going to leave them alone. Fortunately I have one of the best neurosurgeons in Virginia Beach who is monitoring my spinal tumors, and also one of the best general surgeons who has been taking care of my other smaller tumors. I hardly have any scarring from the two surgeries he has done. It is rough, though. I am on pain medication for my spine, plus several anti-depressants and anti-anxiety medications.
Growing up with NF was tough at times. I was a kid when NF was still known as "Elephant Man's Disease" so for most of my school years I was called "Elephant Girl" I have never had a serious boyfriend. Having kids was something that always worried me because of the 50% chance that my kids would have NF. There is no way I would want them to go through what I went through. But after a lot of prayer, God took away my desire to have my own kids, and instead has lead me to become involved with helping care for orphans in Nicaragua. I have been to visit the orphanage there 4 times and have really bonded with a lot of the kids. I love them just as much as if they were my own kids and some of them even call me "mamita" or little mom. They don't care about the little bumps I have and instead, they pray for me every day and write letters to me telling me that they miss me and love me and that I am pretty. It's so sweet. God has also lead me to an amazing church community where I have a really strong network of supportive and accepting friends who love me for who I am. I am still hoping that He will allow me to find someone to fall in love with and get married, but we'll see. He hasn't taken away my desire to get married and what I always pray is that if it is not His will, that He will take away my desire.
Well, that's me in a nutshell. I look forward to meeting some of you in this community :)
Growing up with NF was tough at times. I was a kid when NF was still known as "Elephant Man's Disease" so for most of my school years I was called "Elephant Girl" I have never had a serious boyfriend. Having kids was something that always worried me because of the 50% chance that my kids would have NF. There is no way I would want them to go through what I went through. But after a lot of prayer, God took away my desire to have my own kids, and instead has lead me to become involved with helping care for orphans in Nicaragua. I have been to visit the orphanage there 4 times and have really bonded with a lot of the kids. I love them just as much as if they were my own kids and some of them even call me "mamita" or little mom. They don't care about the little bumps I have and instead, they pray for me every day and write letters to me telling me that they miss me and love me and that I am pretty. It's so sweet. God has also lead me to an amazing church community where I have a really strong network of supportive and accepting friends who love me for who I am. I am still hoping that He will allow me to find someone to fall in love with and get married, but we'll see. He hasn't taken away my desire to get married and what I always pray is that if it is not His will, that He will take away my desire.
Well, that's me in a nutshell. I look forward to meeting some of you in this community :)